We carried out this research to inform our policy and campaigns work on welfare benefits, after finding that there was very little research about the impact of fluctuation on the quality of life of people living with HIV.

We would like to thank everyone who filled in the survey or shared it with their friends and contacts.

The responses to NATís survey revealed that fluctuating symptoms and side-effects including fatigue, depression and anxiety, gastro-intestinal problems and insomnia, are a cause of real distress for some people living with HIV and place significant barriers on work, daily living and social participation.

The report makes a series of recommendations about how fluctuating symptoms should be given more consideration in clinical research and in discussions between clinicians and patients. We also recommend that the impact of fluctuation should be recognised more in benefits and social care assessments.

We are now ensuring that these findings and recommendations are considered by clinicians, researchers and decision-makers.

Please do share this report with your friends, colleagues and contacts. I would also welcome any comments or feedback you may have on our findings - sarah.radcliffe@nat.org.uk